June Update

It’s been a while since I’ve had the energy to write an update. As usual, I have a lot to document in terms of doctors and tests, but, overall, not much to report on my life and illness. My mother was here from Ireland this past week and that was, by far, the highlight of the last 4 months. 6 days seemed like 6 hours, though, and I’m left feeling a bit barren after her departure, like there are tumbleweeds blowing around inside my chest and hollow silence echoing against the inside of my skull.

I’m still housebound besides healthcare appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this because I’m walking more steps than I have since 2012. I regularly hit 2,000 on my pedometer, which does wonders for my mental well-being to think there is forward momentum. However, the flip-side is I have had more severe muscle pain and out-of-character joint aches. I am stiff in the morning and try to make myself put on compression stockings and a back brace if I’m going to stand in the kitchen for any length of time. I know I should scale back movement because, when I do, the muscle pain is better, but I’m really grasping onto that measurable progress for dear life.

There are other slight improvements. My sleep is still better than it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few months earlier this year, which is utterly life-changing. My resting face goes from this :twisted: to this :? .

There are still, always, a lot of daily debilitating symptoms. For 3 full weeks after my birthday outing, I was not doing well. My flu symptoms came back and that always alarms me — chills, sore throat, extremely heavy muscles, pain. I also had a few bouts of the worst vertigo I’ve experienced since my tilt table test payback. One night it came on so quickly and viciously, I fell over and hit the floor on my way to the loo from bed. I was moaning out loud from the queasy out-of-bodiness, which is unlike me, and I was reminded again of Laura Hillenbrand and how unrelenting vertigo could possibly be the worst imaginable symptom.

Hair loss hasn’t stopped, but is better than last year. Or the short, choppy cut disguises it more. My eyes are their usual nightmare of blurriness and sore extraocular muscles, even though I am regimented about (gently) scrubbing the lashes and using preservative-free tears throughout the day. Tinnitus and skin are still bad, my neck is still banjaxed. I am still spending about 14-17 hours in bed each day. I guess that’s a bit better than last year.

Finally, there is no real change in my worst symptom: Brain Drain. Which doesn’t describe it. I’ve been trying to articulate this symptom for years — to doctors, to my husband, my mother. It’s not brain fog. What I call brain fog feels tired and cloudy, causes effort to recall and calculate things. My Buzzy Brain is like Stephen King’s The Long Walk: if you can imagine being made to walk until you physically drop, but then transfer that body feeling to the brain. The same way muscle exhaustion is physical, my brain exhaustion feels physical. My brain can’t take one more step to do anything. Can’t read, write, speak, hear. It comes on gradually, so I usually find myself wading through the quicksand of a conversation or article, slurring or rereading the same thing over and over. I get testy, dizzy, weighted down by head pain and then realise, Oh, duh, time to go to bed and stop everything. Not being able to push through the brain problems (just finish this sentence, this tv show, this meal) is much more depressing than not being able to push through the physical limitations. Take my body, just, please, leave my mind.

The outcome of this is nothing ever gets done. I never finish tasks and months slip by. I also never seem to get going on any plan of attack to conquer the myriad of abnormal test findings: candida, low immunoglobulins, high cholesterol, reactivations of viruses, methylation problems, high mycotoxins. There’s always a bigger fire to put out — the poisoned nocturnal reactions, the crashing blood pressure, the death of my bowel — before I can carefully address less acute problems, while tip-toeing through the minefield of menstruation mast cell instability. Although, given my track record, maybe the best treatment for my body is no invasive treatment at all, just lots of pacing, meditation, good food and the pursuit of laughter.

The few things on which I am actively working are my hormone deficiencies and my tanked thyroid (as per usual). Since last September, I have now quintupled my levothyroxine (T4) and tripled my liothyronine (T3) and nothing has changed. I’m spending an absolute fortune on compounded meds, hoping my body will absorb them better than the generic, affordable ones, but, so far, no dice. I will update soon about my new, wonderful endocrinologist and her thoughts (as well as my other doctor visits).

So, almost 3 years and 8 months sick and that’s where I’m at. If I could find relief from the social isolation and financial instability, there could be some sort of life here.

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But, as it stands, I take my joy from the incredibly beautiful spring we’ve had here in Seattle and every opportunity to lie outside in the garden oasis my husband has created and see my dogs run in the park.

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November Update

[Written Sunday morning:] Every morning I get up and vow to write some of the things crawling around my head and gnawing at my brain and then every day disappears into other things: cooking, feeling like crap, interacting with friends in my facebook group, reading, researching, tv… Today, I’m sequestered in one room while the cleaning lady tackles the rest of the house and I want to do a wee catch up.

Two months after the horrific Cromolyn-induced crash, I’m feeling much better. Not as good as I was beforehand, but so much better than I anticipated I would. If it takes 3 or 4 months to get back to where I was, that will be great–much better than the years I thought it would take (or the never I feared might happen). When I got home from the AirBnB rentals, my husband had cleaned out my bedroom: no furniture besides the bed and bedside table, no more clothes or books, everything hoovered and wiped down with ammonia. He put a vapor barrier up at the top of the stairs–one of those plastic doorways used in construction sites or the house in the film E.T.–and the upstairs is strictly a dog-free zone. Oh, it breaks my heart not to be able to snuggle with my kids and it crushes me when they hear me moving around and whine at the gate we have across the stairs. Another downside is, I’m doing far fewer preemptive rests and meditations because I don’t want to leave them and go upstairs. It used to be our routine to head upstairs a few times a day and lie down. My Little Guy had the times programmed in his brain and would bark to come in from outside and look at me like, “Let’s go, Mama! You need to meditate.” That doesn’t happen anymore and my brain and body are feeling the effects. However, I will begrudgingly admit that it is really reassuring to know that I am spending 12 to 15 hours a day in minimal dander and dog hair. I wake up feeling cleaner internally. That has got to help my poor struggling body, so I’m very grateful for all the hard work my husband put into dedogifying the upstairs.

What it used to be like:

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What I see now from the top of the stairs:

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I haven’t been sleeping very well. Much better than when I was horribly sick, of course, but not as well as I was in the last two rentals. My sleep in that last rental was amazing– I would close my eyes at 11pm and open them at 7am. A few nights that I was there, I woke up after 8am! Never, ever, ever have I slept straight through for over 8 hours without waking up from crazy dreams or painful bones and muscles. It was glorious… besides the fact that I felt poisoned by the new Ikea wardrobes. I wonder if the off-gassing from the new furniture was somehow drugging me into a stupour? Also part of the problem is my apnea devices. I continue to avoid the CPAP because it wakes me up constantly, but the new oral appliance has its own issues. I got the Narval by Resmed, made by a 3D printer.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

The white one is the bendy, light Narval. The pink one is the heavy, rigid nightmare I was trying to use before.

It is incredibly thin and light and bendy, which is everything I wanted and I’m able to fall asleep while wearing it… BUT. … I have worse TMJ issues than I realised and it causes so much pain. Every day, my jaw hurts, my temples ache, my head hurts and then, about once a week, I have a really rough, tense grinding night and I wake up feeling like my jaw is dislocated. It is painful to move and chew and clicks alarmingly. This can’t be good. So, I keep sleeping with no oral appliance or CPAP and I can definitely feel the difference in how I feel in the morning–less rested, more pain, but my jaw in tact. So, what am I to do?

I’ve started seeing my “physical therapist” again. Aka Magic Fingers. He is so wonderful for me. After a 3-month hiatus, the day I returned happened to be the day after he finished a course on strain-counterstrain for the nervous system. The teacher of whatever magic he does flew out to Seattle from the East Coast and trained a group of 30 practitioners. He said, “I’m one of only 30 in the world that have been trained to do this and you are the number one person I want to work on because your nervous system is a mess.” I keep my appointments with him no matter what. I even went last week when he was getting over a cold.

Speaking of colds, it has been 3 years and 19 weeks since I last had a cold. I’m amazed by that. I still live in fear of the day I catch a cold, especially since Dr. Chia said one virus could wipe me out and set back my recovery significantly, if not permanently. You may remember that he recommended I get IVIG to bolster my immune system and protect myself from all you sickies out there. Well, my MD referred me to University of Washington Immunology and they turned me down because my total IgG wasn’t low enough. So, I talked to my ND, Dr. W, and their clinic isn’t licensed to do it. On a whim, I went to see another ND, Dr. I, at a different clinic–mainly because they take insurance and I wanted to have a back-up doctor if I had to stop seeing Dr. W (who does not take insurance and, even with discounts for being unemployed, costs me too much money). The first thing Dr. I said when I came in was, “I think you need IgG.” Oh, bless her. There is hope for this treatment! But let me back up…

So, this new clinic requested all my test results in advance, they photocopied the entire binder and the doctor had reviewed it before I got there. They asked me to run my 23andMe results through MTHFRsupport.com and send them the results (so far, I’ve had 3 doctors tell me they know about methylation and nutrigenomics, but not a single one actually has addressed it. See some of my MTHFRsupport.com Genetic Variance Report here). The clinic has an IV infusion room, looking all dim and cozy, with plush recliners and blankets. They have a hyperbaric oxygen chamber! Something I have been curious about trying for over a year since I read Dr. Deckoff-Jones’s blog. And the clinic is 4 minutes from my house. Score. Dr. I ordered a load more tests and is willing to consider sub-cutaneous immunoglobulin first since I’m a scardy-cat about jumping right into IVIG (assuming we can get either of them approved by insurance, that is). A few days after our appointment, I went to the lab for a blood draw because she wanted to get updated tests and I see her again next week.

It'd be nice if they left some blood in my body.

It’d be nice if they left some blood in my body.

Speaking of test results (which can all be found here), I never mentioned the hormone panel and blood test results ordered by Dr. W in the last few months [bold type is for my benefit, so I can access this info easily when I look back). My varicella zoster IgG, IgM and HSV IgM were all positive. All coxsackie A viruses were high and all coxsackie B except for 3 and 4 (although 4 was high in Dr. Chia’s tests). EBV IgG was high indicating a reactivated infection. My total IgG was even lower than when Dr. Chia tested and, as I mentioned before, my thyroid was tanked: TSH, T3 and T4 all low. But the hormone panel was slightly alarming: almost everything was low: DHEA, progesterone, testosterone, estrone, aldosterone, androsterone, pregnanediol, tetrahydrocortisol and on and on. Not sure how concerned I should be, but Dr. W put me on topical DHEA (about 5mg rubbed into my abdomen in the mornings) and supposedly that should help something. It’s been a month now and the only difference that I’ve noticed is my period was 3 weeks late after I started it. My period has pretty much been every 28-29 days for 25 years. I just descovered today that it has MSM in it, which I’m not meant to have because of my sulfur issue. I’ll ask her about it when I see her on Wednesday.

So here’s what I’m taking currently:
Topical DHEA
Probiotics
Riboflavin-5-phosphate
Trace Minerals
Vitamin C
Vitamin D3
Vitamin K2
Fish oil
1/3 of a capsule of B complex #6
Magnesium
Biotin sporadically
Zinc sporadically
Charcoal sporadically
Quercetin sporadically
Gentian/Wormwood sporadically

I also started oil pulling a few times a week (when I remember) against my better judgement, but my nutritionist thought I should give it a try, so, why not?

I try to use my dry skin brush about once a week.

I am in my third month of Restasis and my eyes are worse than ever. They are never not bothering me. Swollen, itchy, tingly, burning, blurry, gritty. Always.

I have a new pillow, which is a god-send for my bursitits in my shoulders, but I had to let it off-gas outside for over a month. It still slightly concerns me, so I emailed Dr. Bob and here’s what he said: “We do not use flame retardants or any other harmful chemicals. On the Amazon site you can see our product obtained the Oeko-Tex Standard 100 Certification. This is a difficult certification to receive and shows this testing lab certifies the pillow is free of harmful chemicals. Oeko is the best know lab and certification for products to be free of harmful chemicals.” Hmmm… well, this thing stinks and I hope it isn’t off-gassing into my brain.

I love love LOVE having short hair. Can’t believe I didn’t do it sooner. Hair is such a nightmare when you’re sick and the cut disguises all the hair loss in the front.

Grainy photo, but you get the gist.

Grainy photo, but you get the gist.

What else?

I’m still on a modified AIP (autoimmune paleo) plus low-histamine-ish diet. I am not strict on AIP or low-histamine becasue I’m always trying to reintroduce foods back into my diet so I can have as many nutrients as possible and don’t develop even more sesntivities. I constantly warn everyone on my Facebook group not to take an elimination diet lightly and add back as many foods as possible as quickly as possible. It becomes a trap. Eating fewer foods causes a host of new issues (in my case, gastroparesis, worsening constipation and odd reactions that I never had before embarking on AIP). Also, the longer you don’t eat them, the harder they are to get back — both physically and mentally. Hence the reason I never eliminated ice cream, chocolate and packaged chips. God forbid I lose my unhealthy addictions. I need the soul food (although, I do really think one of these days I have to see if I feel better without sugar in my life. It’s just that it was easier to quit gluten, dairy, drinking alcohol and smoking than it seems to be to even contemplate eliminating sugar for a few weeks). One of these days I’ll write a post on what I eat on this diet, but, in the meantime, you can see photos on my Instagram account, if you’re interested (minus all the crap I eat–I’m trying to inspire people, after all, not cause them inflammation).

We ordered a free-range, organic, recently-harvested, fresh (not frozen) turkey for pick up today for Thanksgiving, but, to keep histamines low, we have to roast it right away (and then my husband freezes the leftover meat for me and makes bone broth from the carcass), so we are celebrating Thanksgiving today. We were going to have a get-together with our friends, Z and J, and my sister and her boyfriend (hence the cleaning lady), but it fell through, so the two of us are going to sit down to a 12-pound turkey alone. It’s ok. I’m thankful that I was feeling almost well enough to have some people over for the first time in 2.5 years. I’m thankful that I still have some people in my life to invite over. I’m thankful that I will have a yummy dinner and I don’t even mind that almost every meal I eat looks like Thanksgiving dinner and there really won’t be any different fun stuff. At least I’ll have turkey instead of chicken. And maybe the tryptophan will help me sleep!

Speaking of food, I’m starving and the cleaning lady is in the kitchen. I don’t want to get in her way or have to chat, so I’m trying to think of what else I can tell you all.

I made it to the freezing cold cemetery on the scooter for about 40 minutes a few weeks ago, wearing about 5 layers and carrying a hot water bottle. It was literally my first time spending some time outside in a month. The winter is hard that way. It really feels unhealthy to be trapped inside 24 hours a day. I have to make an effort to put on my coat and hat and go out into the garden. Please remind me!

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We bought a proper comfy dog bed for the kids seeing as they are arthritic and bony (it was on sale, has no fire retardants and is returnable at any time, even if used). It’s the size of a small country. 110-pound Bowie is thrilled when he can actually lie in it and Little Guy doesn’t relegate him to the crappy small bed.

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I found ants in my room one morning. They were running in droves all over the floor. It took days and days to kill them and there are still carcasses strewn about. It was pretty gross.

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I’m still going to therapy. It’s been great recently. He’s very interested in cultural history as a jumping-off point and that is helpful for someone who mourns the loss of Ireland and regularly starts blubbering over how powerfully I miss it.
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I have a lot of issues to work out there– An American by birth who never questioned that I was Irish, but wound up back in America and then felt rejected by the country I love… Marrying a man with an identical upbringing and thinking, “how perfect! We can relocate back home,” but it’s not home to him anymore… staying in America by default, year after year, but always wishing I was in Ireland and planning the eventual return… and then getting a disease that stops me from returning, so I have no choice, anyway. My therapist asked me if I’d be able to manage my illness better if I were living in Dublin and I said yes because my mother, aunt and best friend live there. And so does my heart. But it’s a difficult place to live and we’d have no money, so that’s not the answer.

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Ok, I can’t avoid it any longer, I have to eat. And that was really dredging the bottle of the barrel for stuff to tell you about.

I’m thankful for all of you, too, dear readers. You have no idea. Love and thanks and nom nom nom gobble gobble to everyone this week. X

Some New York Times Articles For You

I’m in what feels like a total free fall, so here are some interesting NY Times articles to keep you entertained while I’m unable to write: The Claim: Fibromyalgia Is Affected by WeatherHow Accurate Are Fitness Trackers?Don’t Take Your VitaminsResearchers Find Biological Evidence of Gulf War Illnesses. The latter has many quotes that we will all find familiar:

“After leaving the Army in 1992, he said his health continued to deteriorate, to the point where he could not hold jobs. Doctors gave him diagnoses of migraines, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome. They gave him medications that did not seem to help and offered treatment for post-traumatic stress disorder, he said. ‘I was told I had these problems because I was depressed. And yes, I was depressed,’ Mr. Brown said. ‘But that’s part of having so many things wrong. That’s not what caused it.'”

Really? The Claim: Fibromyalgia Is Affected by Weather

By ANAHAD O’CONNOR

JUNE 10, 2013

THE FACTS

No one really knows precisely what causes the debilitating fatigue and muscle pain of fibromyalgia. But some people who have the disorder say they know what can make it worse: changes in the weather.

Cold, damp days and drops in barometric pressure are widely associated with flare-ups in symptoms of the condition, which affects mostly women. In one study by the National Fibromyalgia Association, people with the condition ranked weather changes as one of the leading aggravating influences on pain and stiffness.

Unlike the reported connection between arthritis and changes in temperature and pressure – which has mostly been debunked – the belief that fibromyalgia symptoms fluctuate with the weather has not been the subject of thorough research. The few studies that have investigated ithave mostly found little evidence of a link.

In the latest report, published this month in the journal Arthritis Care & Research, Dutch researchers followed 333 middle-aged women who had fibromyalgia, looking for relationships between environmental conditions and their levels of pain and fatigue. Over the course of a month, the researchers monitored humidity levels, atmospheric pressure, precipitation, temperature and sunshine duration, using data from a meteorological institute.

In some cases, they did find that weather variables had “significant but small” effects on pain and fatigue. But for the most part, they concluded, there was “more evidence against than in support of a uniform influence of weather on daily pain and fatigue.”

THE BOTTOM LINE

Most studies have not found much evidence of a link between fibromyalgia symptoms and weather patterns.

How Accurate Are Fitness Trackers?

By GRETCHEN REYNOLDS

JUNE 12, 2013

Nate Meckes recognized that he needed to study the accuracy of activity monitors after wearing one. A shipment of the devices, known technically as accelerometers and designed to measure a person’s movement and energy expenditure, had arrived at Arizona State University, where Dr. Meckes was a researcher. To ensure they were operational, he slipped one over his hip and wore it throughout the day, including to an interminable meeting where he stood up and paced. “I’m not good at sitting still,” he says.

Checking his monitor afterward, though, he was flabbergasted. “It had recorded that I was not moving at all,” says Dr. Meckes, now an assistant professor at Azusa Pacific University in Azusa, Calif. The experience inspired him to set up an experiment examining how reliable such devices are.

Until recently, accelerometers, which use electronics to determine bodily movement and intensity, had been confined to research laboratories. But now, at-home users can choose from a variety of devices, sold under such brand names as Fitbit and Nike+ FuelBand. Some are worn on the hip; others on the arm or wrist. All sense movement and feed data into the device’s electronic brain, where proprietary equations determine how much energy someone is expending, meaning, in practical terms, how many calories they burn.

But by and large, users have had to take such measurements on faith. Unbiased, comparative studies of the devices haven’t been available.

Which makes Dr. Meckes’s experiment useful and timely, particularly since his results, presented last month in Indianapolis at the annual meeting of the American College of Sports Medicine, join those of a number of other new studies in raising concerns about just how well today’s activity monitors do their job.

For his experiment, Dr. Meckes gathered 16 adult volunteers and fitted each with three different monitors, two worn on the hip and one around the arm. The volunteers also donned portable masks that measure oxygen consumption, the gold standard in determining energy output.

The volunteers then threw themselves into a variety of activities in the university’s physiology lab, including walking on a treadmill, cleaning a simulated kitchen, standing up, typing at a computer and playing a board game.

All three of the devices accurately measured energy expenditure when the volunteers walked briskly, Dr. Meckes and his colleagues found; their estimates closely matched those of the oxygen-consumption monitor.

But the devices were far less reliable in tracking the energy costs of light-intensity activities like standing or cleaning, often misinterpreting them as physical immobility. Only the calorie cost of typing was overestimated, and only by the armband monitor, which considered the arm movements involved to be far more dynamic than they actually are.

These miscalculations echo those of the findings from several other new studies. One, also reported at the sports medicine meeting, involved 74 adults, young and old, who wore an armband accelerometer and a portable oxygen-consumption gauge while walking, jogging, riding a stationary bicycle, windmilling an arm ergometer, and completing so-called activities of daily living, like lifting boxes and sweeping.

Again, the accelerometer measured the more strenuous bodily movements, like jogging, fairly accurately. But it significantly underestimated subtler activities, like sweeping, and was “terrible” at measuring bicycle pedaling, which involves no arm movement, says Glenn Gaesser, the director of the Healthy Lifestyles Research Center at Arizona State University in Phoenix, who oversaw the study.

So, too, a study published last month in Medicine & Science in Sports & Exercise found that several hip-mounted accelerometers underestimated the energy involved in standing up, bicycling and walking or jogging uphill, says Ray Browning, an assistant professor of exercise science at Colorado State University in Fort Collins, who led the study.

The question, of course, is whether it matters if the devices are inaccurate, especially if they underestimate daily energy expenditure, and perhaps fiendishly spur some at-home users to move more, thinking that they’ve expended less energy than they actually have.

The studies’ researchers think the inaccuracies do matter. “There’s a growing consensus” among exercise scientists, Dr. Meckes says, “that people should spend less time in sedentary activities, like sitting,” and instead stand up, stroll or sweep more. But if people get the idea from their activity monitors that such activities don’t really count, in terms of movement and calorie expenditure, “it may be harder to get that message across,” he says.

The good news is that accelerometers are improving, Dr. Browning says. The algorithms underlying the devices’ measurements — which are developed by engineers using data from people wearing the devices — are constantly being refined. And researchers, including Dr. Browning, are exploring better monitor placement.

At Colorado State, for instance, he and his colleagues have created a prototype shoe-based accelerometer, which embeds the electronics in an insole. In his recent study, this device better captured changes in posture and foot pressure than hip-level accelerometers.

Still, the lesson at the moment for anyone who owns an accelerometer is that the device’s measurements are likely to be imperfect — which, says Dr. Gaesser, does not mean you should stash yours in a drawer. “They may not be accurate” for counting calories, he says. “But for many people, they’re inspirational, and if using one gets someone to move more, then as far as I’m concerned, it’s serving a good purpose.”

Don’t Take Your Vitamins

By PAUL A. OFFIT

June 8, 2013

PHILADELPHIA — LAST month, Katy Perry shared her secret to good health with her 37 million followers on Twitter. “I’m all about that supplement & vitamin LYFE!” the pop star wrote, posting a snapshot of herself holding up three large bags of pills. There is one disturbing fact about vitamins, however, that Katy didn’t mention.

Derived from “vita,” meaning life in Latin, vitamins are necessary to convert food into energy. When people don’t get enough vitamins, they suffer diseases like scurvy and rickets. The question isn’t whether people need vitamins. They do. The questions are how much do they need, and do they get enough in foods?

Nutrition experts argue that people need only the recommended daily allowance — the amount of vitamins found in a routine diet. Vitamin manufacturers argue that a regular diet doesn’t contain enough vitamins, and that more is better. Most people assume that, at the very least, excess vitamins can’t do any harm. It turns out, however, that scientists have known for years that large quantities of supplemental vitamins can be quite harmful indeed.

In a study published in The New England Journal of Medicine in 1994, 29,000 Finnish men, all smokers, had been given daily vitamin E, beta carotene, both or a placebo. The study found that those who had taken beta carotene for five to eight years were more likely to die from lung cancer or heart disease.

Two years later the same journal published another study on vitamin supplements. In it, 18,000 people who were at an increased risk of lung cancer because of asbestos exposure or smoking received a combination of vitamin A and beta carotene, or a placebo. Investigators stopped the study when they found that the risk of death from lung cancer for those who took the vitamins was 46 percent higher.

Then, in 2004, a review of 14 randomized trials for the Cochrane Database found that the supplemental vitamins A, C, E and beta carotene, and a mineral, selenium, taken to prevent intestinal cancers, actually increased mortality.

Another review, published in 2005 in the Annals of Internal Medicine, found that in 19 trials of nearly 136,000 people, supplemental vitamin E increased mortality. Also that year, a study of people with vascular disease or diabetes found that vitamin E increased the risk of heart failure. And in 2011, a study published in the Journal of the American Medical Association tied vitamin E supplements to an increased risk of prostate cancer.

Finally, last year, a Cochrane review found that “beta carotene and vitamin E seem to increase mortality, and so may higher doses of vitamin A.”

What explains this connection between supplemental vitamins and increased rates of cancer and mortality? The key word is antioxidants.

Antioxidation vs. oxidation has been billed as a contest between good and evil. It takes place in cellular organelles called mitochondria, where the body converts food to energy — a process that requires oxygen (oxidation). One consequence of oxidation is the generation of atomic scavengers called free radicals (evil). Free radicals can damage DNA, cell membranes and the lining of arteries; not surprisingly, they’ve been linked to aging, cancer and heart disease.

To neutralize free radicals, the body makes antioxidants (good). Antioxidants can also be found in fruits and vegetables, specifically in selenium, beta carotene and vitamins A, C and E. Some studies have shown that people who eat more fruits and vegetables have a lower incidence of cancer and heart disease and live longer. The logic is obvious. If fruits and vegetables contain antioxidants, and people who eat fruits and vegetables are healthier, then people who take supplemental antioxidants should also be healthier. It hasn’t worked out that way.

The likely explanation is that free radicals aren’t as evil as advertised. (In fact, people need them to kill bacteria and eliminate new cancer cells.) And when people take large doses of antioxidants in the form of supplemental vitamins, the balance between free radical production and destruction might tip too much in one direction, causing an unnatural state where the immune system is less able to kill harmful invaders. Researchers call this the antioxidant paradox.

Because studies of large doses of supplemental antioxidants haven’t clearly supported their use, respected organizations responsible for the public’s health do not recommend them for otherwise healthy people.

So why don’t we know about this? Why haven’t Food and Drug Administration officials made sure we are aware of the dangers? The answer is, they can’t.

In December 1972, concerned that people were consuming larger and larger quantities of vitamins, the F.D.A. announced a plan to regulate vitamin supplements containing more than 150 percent of the recommended daily allowance. Vitamin makers would now have to prove that these “megavitamins” were safe before selling them. Not surprisingly, the vitamin industry saw this as a threat, and set out to destroy the bill. In the end, it did far more than that.

Industry executives recruited William Proxmire, a Democratic senator from Wisconsin, to introduce a bill preventing the F.D.A. from regulating megavitamins. On Aug. 14, 1974, the hearing began.

Speaking in support of F.D.A. regulation was Marsha Cohen, a lawyer with the Consumers Union. Setting eight cantaloupes in front of her, she said, “You would need to eat eight cantaloupes — a good source of vitamin C — to take in barely 1,000 milligrams of vitamin C. But just these two little pills, easy to swallow, contain the same amount.” She warned that if the legislation passed, “one tablet would contain as much vitamin C as all of these cantaloupes, or even twice, thrice or 20 times that amount. And there would be no protective satiety level.” Ms. Cohen was pointing out the industry’s Achilles’ heel: ingesting large quantities of vitamins is unnatural, the opposite of what manufacturers were promoting.

A little more than a month later, Mr. Proxmire’s bill passed by a vote of 81 to 10. In 1976, it became law. Decades later, Peter Barton Hutt, chief counsel to the F.D.A., wrote that “it was the most humiliating defeat” in the agency’s history.

As a result, consumers don’t know that taking megavitamins could increase their risk of cancer and heart disease and shorten their lives; they don’t know that they have been suffering too much of a good thing for too long.

Researchers Find Biological Evidence of Gulf War Illnesses

By JAMES DAO

June 14, 2013

In the two decades since the 1991 Persian Gulf war, medical researchers have struggled to explain a mysterious amalgam of problems in thousands of gulf war veterans, including joint pain, physical malaise and gastrointestinal disorders. In some medical circles, the symptoms were thought to be psychological, the result of combat stress.

But recent research is bolstering the view that the symptoms, known collectively as gulf war illness, are fundamentally biological in nature. In the latest example, researchers at Georgetown University say they have found neurological damage in gulf war veterans reporting symptoms of the disease.

Using magnetic resonance imaging to study the brains of gulf war veterans before and after exercise, the researchers discovered evidence of damage in parts of their brains associated with heart rate and pain. Such damage was not evident in the control group, which included nonveterans and healthy veterans.

Such neurological damage, the researchers theorize, caused the veterans to be more sensitive to pain, to feel easily fatigued and to experience loss of short-term “working memory,” all symptoms associated with gulf war illness.

Their study, published by the online medical journal PLoS One on Friday, does not try to explain the causes of the damage. It also found different patterns of damage in two groups of veterans, indicating that the disease — if it is indeed a single ailment — takes different paths in different people.

But the authors said the findings, along with other recent research, may offer clues in developing treatments and diagnostic tests for the illness, which currently is diagnosed through self-reported symptoms and has no definitive treatment.

Two other studies released by Georgetown this year have also pointed to neurological damage in the brains of veterans reporting symptoms of gulf war illness, including one that showed abnormalities in the nerve cells linking parts of the brain involved in processing feelings of pain and fatigue.

The research makes clear that “gulf war illness is real,” said Rakib U. Rayhan, the principal author of the new study. “There is objective evidence that something is wrong in the brains of these veterans.”

Other experts offered more tempered views, noting that most of the subjects in the Georgetown study were self-selected and that their number was relatively small: 28 veterans with symptoms and 10 participants without symptoms.

Dr. Drew A. Helmer, director of the Department of Veterans Affairs’War-Related Illness and Injury Study Center in New Jersey, called the Georgetown studies “very preliminary” but also “a very important step forward.”

But Dr. John Bailar, an emeritus professor at the University of Chicago who led a group that studied gulf war illness in 1996, said the new study did not provide enough data to determine whether the veterans’ symptoms were linked to their deployments to Kuwait, or something entirely different.

“I am not questioning whether a substantial proportion of veterans of Desert Storm have symptoms related to their service,” Dr. Bailar said in an e-mail. “I am questioning whether those symptoms have any cause other than the stress of war itself.”

Studies by the Department of Veterans Affairs have estimated that as many as 250,000 of the nearly 700,000 service members who served in the Middle East in 1990 and 1991 have reported symptoms of gulf war illness, which is also known as chronic multisymptom illness.

Gulf war illness has been the source of much frustration and dispute practically since veterans first reported symptoms in the 1990s. Many veterans say that their complaints were initially dismissed as psychological. Many also believe that their problems are the result of exposure to nerve agents, pesticides, herbicides and other chemicals, but that the government has been slow, or unwilling, to pinpoint causes.

Even some government researchers have made that case. At a Congressional hearing in March, Dr. Steven S. Coughlin, an epidemiologist who once worked for the Department of Veterans Affairs, asserted that the department had systematically played down the neurological basis of gulf war illness. At the same hearing, a member of an advisory panel to the department said the agency still seemed guided by the view that symptoms of gulf war illness were stress-induced.

“This is a throwback to early speculation from the 1990s that there was no problem, or that veterans just had random, disconnected symptoms,” testified Dr. Lea Steele, a Baylor University epidemiologist who was a member of the Research Advisory Committee on Gulf War Veterans’ Illnesses.

USA Today reported on Friday that Eric K. Shinseki, the secretary of veterans affairs, had taken steps to replace members of the advisory committee and reduce its independence. Advocates for gulf war veterans say the changes are meant to rein in a committee that has consistently been more aggressive than the department in saying that gulf war illness is a physical condition related to exposure to toxins.

In a statement, the department defended its research into gulf war illness. “V.A. is clear in its commitment to treating these health issues and does not endorse the notion some have put forward that these physical health symptoms experienced by gulf war veterans arise as a result of PTSD or other mental health issues from military service,” the statement said, referring to post-traumatic stress disorder.

Still, many veterans, like Ronald Brown, who was part of the Georgetown study, say their problems after returning from Kuwait in 1991 were not taken seriously.

An infantryman with the 82nd Airborne Division, he was at a base in southern Iraq when engineers destroyed the nearby Kamisiya ammunition depot containing nerve gas. The Pentagon has said that as many as 100,000 American troops could have been exposed to the toxic gas in that demolition.

Mr. Brown, 45, says that before the invasion, he was in top physical condition, regularly scoring high on Army physical fitness tests. But after Kamisiya was destroyed, he began experiencing headaches, nausea and shortness of breath. When he returned to the United States, he says he failed a fitness test badly. “I plain and simple couldn’t get enough air,” he said.

After leaving the Army in 1992, he said his health continued to deteriorate, to the point where he could not hold jobs. Doctors gave him diagnoses of migraines, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome. They gave him medications that did not seem to help and offered treatment for post-traumatic stress disorder, he said.

“I was told I had these problems because I was depressed. And yes, I was depressed,” Mr. Brown said. “But that’s part of having so many things wrong. That’s not what caused it.”

Tomorrow is International M.E. Awareness Day.

Tomorrow is International M.E. Awareness Day. There are many events happening around the world, both online and in person. You can google your area to see if there is anything going on, but what I ask is something simple:

Please make an effort this month to talk about this disease. Look for opportunities to raise awareness. Don’t worry about being a “downer” or bringing up an awkward, depressing subject. Let people know that there is an illness that stops life in its tracks and has no approved drug treatments and very little funding for research. Explain that this has nothing to do with laziness, depression, tiredness or burn-out. Explain that there are test abnormalities, but doctors aren’t taught about the (possible/probable) etiologies of this disease so most do not recognise it and certainly don’t know what to test for or how to treat it. Make it known that patients languish in their homes ~ or, more likely, a family member’s home ~ are passed from dismissive specialist to thieving charlatan and back again, use up all their resources, and usually reach a point where they are trying to just survive because it is too exhausting to research treatments and search for medical help. Warn people that ME is often accompanied by crippling neurological issues, autonomic dysfunction, new allergies and multiple chemical sensitivity (MCS), postural orthostatic tachycardia syndrome (POTS), chronic migraines, irritable bowel syndrome (IBS), fibromyalgia (FM), mast cell problems (MCAD), sleep dysfunction and, of course, the depression and anxiety that would be hard to avoid with a diagnosis like this. These are all debilitating conditions in their own right, so drawing awareness to them is just as valuable.

As with many awareness campaigns, ribbons are worn to show support – blue for ME/CFS, purple for FM, and green for MCS. What I like about this is, it might bring up the conversation. Most people recognise the pink ribbon representing breast cancer awareness or the yellow Livestrong wristband which supports cancer survivors, but perhaps you will encounter someone who asks, “What does the blue ribbon stand for?” And then you can launch into your educational lecture. 🙂

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A few things going on around the world:

Niagara Falls will be illuminated in blue tomorrow, May 12th, from 9:45-10:00pm EST to raise awareness to M.E. From 10:15-10:30pm EST the falls will be purple for fibromyalgia (FM) and from 11:00-11:15pm EST the falls will be green to draw attention to multiple chemical sensitivity (MCS). You can watch it on their live webcam. Or try: http://www.earthcam.com/canada/niagarafalls/

In London, there is the “All Fall Down for M.E.” protest outside the Houses of Parliament at the Old Palace Yard.

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In Victoria, Australia at Melbourne University, there is an ME/CFS Educational Fun Run.

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Bob Miller is skydiving to promote ME research in Lodi, California.

The Irish ME/CFS Association is hosting four talks by Dr. Ros Vallings from New Zealand next week.

There are  five screenings of Voices from the Shadows across three continents in May.

Read this article by Mark at Phoenix Rising to get all the details about these events and many more.

Finally, consider writing to your local paper to raise awareness. Read this post by the ME/CFS Self-help Guru for inspiration.

Thank you to everyone in my life that has talked about this baffling illness, raising awareness one person at a time. Thanks to my father for talking to his staff about this disease and to my mother for talking to her dog park friends about it and to Z. and E. for explaining my situation to other people I know and to my husband for constantly making excuses for my absence, trying to educate others on what is going on and raging at medical professionals’ and society’s ignorance, allowing me to be angry by proxy since I don’t have the energy for it.

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